Frontier Science Foundation US Privacy Notice


At Frontier Science Foundation (FSF), we are committed to safeguarding the privacy of personal data in accordance will all applicable domestic and international laws and regulations. This privacy notice explains how FSF handles personal data, and data subjects’ rights in relation to the personal data it holds.

FSF is a joint controller and processor of personal data subject to the European Union (EU) General Data Protection Regulation (GDPR) if such data are provided to FSF while the subjects are located in the EU. For more information please see


This privacy notice applies to all data subjects residing or domiciled in the EU, whose personal data are collected or processed by FSF. If the data subject is located in any of the European Member States at the time of FSF personal data collection or processing, this privacy notice will apply to such data subject.

Further, this privacy notice applies to all GDPR applicable data whether it was provided to FSF on the FSF website or any other means whereby personal data are collected by, or on behalf of, FSF.


FSF is responsible for ensuring that this notice is made available to data subjects. All FSF personnel who interact with data subjects that are subject to the GDPR are responsible for ensuring that this notice is drawn to the data subjects' attention.


FSF is a private, not-for-profit organization which offers clinical trial data management and statistical analysis services. As an organization located wholly within the United States, FSF has elected to appoint one if its European affiliates, Frontier Science Scotland, as its GDPR representative for purposes of liaising with data subjects and also Data Protection Authorities (DPAs). The contact information for both entities can be found below.

Since its founding in 1975, FSF has been providing accurate and cost-effective data management, statistical and other support services to research networks, pharmaceutical companies and investigators. We collaborate with scientists and technicians in more than 800 laboratories, universities and medical centers around the world engaged in clinical and observational trials.

Funded by the U.S. National Institutes of Health, pharmaceutical companies and other organizations, our focus has been on studies related to cancer and HIV, although we also have projects targeting other diseases and conditions.


Per GDPR, personal data are defined as: any information relating to an identified or identifiable natural person ('data subject'); an identifiable natural person is one who can be identified, directly or indirectly, in particular by reference to an identifier such as a name, an identification number, location data, an online identifier or to one or more factors specific to the physical, physiological, genetic, mental, economic, cultural or social identity of that natural person.

The personal data that FSF collects may include: Pseudonymized clinical trial subject data (personal data that can no longer be attributed to a specific data subject without the use of additional information), name and contact information such as e-mail address, mailing address and phone number.

The pseudonymized data we process contain "special categories of data." Per GDPR, "special categories of data" are defined as: racial or ethnic origin, political opinions, religious or philosophical beliefs, trade union membership, genetic data, biometric data, data concerning health or data concerning a natural person's sex life or sexual orientation.

FSF collects and processes this data with the data subjects' explicit consent managed by an FSF Clinical Trial Sponsor. In addition only the necessary information is collected as defined by the overarching protocol and other study documents.


Per GDPR, processing is defined as:

Any operation of set of operations which is performed on personal data or on sets of personal data, whether or not by automated means, such as collection, recording, organization, structuring, storage, adaptation or alteration, retrieval, consultation, use, disclosure by transmission, dissemination or otherwise making available, alignment or combination, restriction, erasure or destruction.

Personal data are collected and processed in the following ways:

  1. Via our Data Management System(s): When one consents to be a Clinical Trial Subject, FSF collects pre-determined personal subject data directly or through a Clinical Trail Sponsor. Data are entered to our system by Sponsor's representative and data sets are generated. FSF collects only the pre-determined information necessary to allow us to fulfill our contractual obligations and the study protocol.
  2. Via the Sponsor's representative: Data sets are securely transferred to FSF for statistical analysis purposes. After the statistical analysis is completed, reports are sent and discussed with sponsor's representatives.
  3. Via Contract and Agreements with collaborators: Personal information is collected in contract and agreements which are archived in secured and access-controlled electronic or physical file systems.
  4. Via telecommunications: Phone and computer (email). When you communicate directly with FSF by means such as telephone, email or via the FSF portal website.
  5. FSF websites: Websites maintained by FSF may track user interaction and activity using tools such as Google Analytics (GA) and cookies. GA collects data such as geographical location, IP Address, internet browser, operating system, referral source and length of visit. Cookies are small text files stored on your device (computer, tablet or mobile) when you are on the Internet. You have the ability to delete cookie files from your hard drive at any time or to disable cookies by configuring your browser to reject them or to notify you when a cookie is being placed on your hard drive. If you choose to disable cookies in your web browser, some features in some FSF maintained websites may not work as expected.


  1. Contract with Clinical Trial Sponsors: Scientific Research Purpose.
  2. Contract/Agreement with Collaborators: Scientific Research Purpose.
  3. Website: FSF web environment improvements and accessibility.
  4. Public interest: Public and health, advancement of science.


FSF does not share personal data with parties other than what the contract or agreement specifies. If a third party has access to study data, it is bound by contract to abide by data privacy requirements.


FSF will collect, process and store personal data per all domestic and international laws and regulations, including the specific requirements of the GDPR where applicable. We strive to keep personal data we hold safe, with integrity and not for longer than necessary, per contract terms, applicable laws and regulations; and for audit purposes.


At any point while FSF is in possession of, or processing personal data, per GDPR a data subject has the following rights:

Rights listed above differ depending upon applicable exceptions per GDPR. The above rights are not absolute, and we may be entitled to refuse requests where exceptions apply. In the event that FSF determines that you are not entitled to exercise any of the above rights, FSF will provide you with the reason(s) for the denial. Nevertheless, you have the right to complain as outlined below in a subsequent section.

The erasure of your information may also be subject to FSF Records Retention Policy. Should the data fall within exceptions where FSF is legally required or permitted to retain such data for a certain period of time, FSF will retain that data in accordance with its legal permissions or obligations.


FSF, at your request, can confirm what information it holds about you and how it is processed. You could request the following information:

If you wish to exercise your right to access the data FSF has about you, please contact our GDPR Compliance Team at the information provided below.


Because FSF is located within the United States, it has appointed an EU representative for the purposes of accepting data subject requests and for liaising with EU Data Protection Authorities (DPAs). You may therefore either contact FSF directly below, or contact it via its representative as also noted below.

Please contact the FSF at:
Frontier Science Foundation
4033 Maple Road
Amherst, NY 14226
1 (716) 834-0900

FSF EU Representative:
Frontier Science (Scotland) Ltd
Grampian View
PH21 1NA
Tel: +44 (0) 1540 651 000


The personal data FSF holds is subject to rigorous measures and procedures to minimize the risk of unauthorized access or disclosure. However, FSF or an FSF Sponsor will contact you if a breach affecting your personal data occurs.


You have the right to submit a complaint directly with the supervisory authority and FSF GDPR Compliance Team to:
Frontier Science Foundation
4033 Maple Road
Amherst, NY 14226
1 (716) 834-0900

Supervisory Authority:
More information:

Complaint process map:


Revisions to this Privacy Notice may occur as a result of changes to FSF privacy practice, without notice to you. However, if the content of this notice changes, we will place a notice on our website and/or otherwise communicate this fact to you.